World Prematurity Day 17 November 2016

Catriona Ogilvy
Front line NHS employee and mother of two boys born early; raising awareness of life beyond neonatal care

Lost in a medical world I once knew

I used to work in neonatal care; I thought I knew what neonatal care was like.
I had no idea what neonatal care was like.

I thought I understood the importance of enabling mums to be mums in neonatal intensive care.
I had no idea of what it was like to be a mum in neonatal intensive care.

I used to think how amazing it must feel to finally take your baby home, saying goodbye to the NICU journey.
I now know that neonatal journey lasts long after bringing a baby home and that the emotions you feel as you leave the unit are often complex and conflicting.

You see, I used to work in neonatal intensive, but I didn't have a clue!

As a children's Occupational Therapist I've worked with premature babies in NICU, with critically ill children in paediatric intensive care and with children with life limiting conditions. In all these settings a considerable part of my job has been to enable parents to fulfil their occupations as mothers and fathers. Teaching students I would often emphasise of the importance of giving parents the opportunity to be mums and dads even in the most medical of worlds - I never imagined though that I would be that mum, the one who stands by watching and waiting, feeling helpless.

Pregnant for the first time my GP asked which hospital I would like to be booked into, I responded without hesitation. If anything was to go wrong I wanted to be at a hospital where I knew and trusted the neonatal services. Little did know that six months later I would be walking through their doors as a NICU mum and that I would hardly recognise the medical environment where I had once worked.

Alarms, bells and buzzers - part of the background noise for staff; but as a mother beside an incubator the alarms and buzzers cut straight through to my very core.

Hand washing - for staff part of the everyday routine; for parents not only a delay in being able to see your baby, but a time where anxieties around infection are felt or a time to worry about how your baby will be when you see them.

The ups and downs of NICU - part of the course for NICU staff, all to be expected; but for parents, even the smallest bump along the way can hit you hard.
Touching, handling, changing and holding - second nature to an experienced NICU nurse; scary, frightening, overwhelming and precious to parents.

I used to think I knew what NICU was like; I had no idea.

As an Occupational Therapist, tiny babies, poorly children, anxious parents, lines, machines and tubes were what I did. As a mother I didn't recognise the medical world in which I had worked and had felt so at home. The machines and monitors seemed alien to me, the smallest bump hit me hard and the sound of alarms and buzzers would stop me in my tracks.

Becoming a mother, but not able to be a mother, I felt lost. I thought I understood the importance of enabling mums to be mums in neonatal and intensive care. I did know the importance - it is vital; but I had no idea of the lasting trauma and the overwhelming sense of emptiness and loss mothers can experience in NICU.

I reflect upon my journey often now in my professional capacity, knowing that my practice and care for families is improved through empathy and understanding.
To know and understand a parent's journey through NICU and beyond is key for professionals in order to offer the much needed support and care. Only those who have experienced NICU first hand however can truly understand, which is why speaking openly and honestly about our experiences, particularly today on World Prematurity Day, is so important, raising awareness one step at a time.